Taking care of families with chronic pain

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Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 8/31/2010 6:44 AM (GMT -7)   
So last night my fiance and I had a disagreement about something that is still with me today. He wants me to stop taking care of the house and family when I have bad pain. I didn't know how to tell him that if I did stop taking care of everyone when I had "bad pain" I would never take care of them again. That depressed me more than anything has in life up to this point. Staying in bed ALL day is not the way I want my life to go. I explained to him that is not who I am, someone who can just ignore their needs for my own. He knows and loves me for my determination and strength, but would like me to take care of me too. We are working on a way to balance these things for us all.
 
I believe the reason I am so depressed is that I want him to see that I am in pain, without me actually having to admit how bad it is. Not that I want him to be a mind reader, or instinctively know or be trained, just to have that compassion. I can't bring myself to tell him how bad things are for me everyday. He would naturally want to help or make it go away, and that is just setting him up for hurt feelings. There is no way to make it go away. He does make me feel better all the time. Every dinner, every time he and the boys clean, every ride and grocery trip and stop after work for a comfort food or even just med pick ups or something I forgot on the shopping list. We have a chore chart and everyone helps and is responsible for their own things. My jobs are easy for me, so I feel success when I finish them, as are the boys and my fiance's. Dinner is a family affair from prep to table. We all work together and make a good team. Its my squeaky wheel that throws that balance off. I feel I should do most of it and not ask for so much help.
 
The problem is my outlook. I want to do more for my family, not less. It shouldnt all be on his shoulders. Women now look at me in horror when I say I am a stay at home mom. Its like its taboo now. Where did our priorities as a society go, when a mother is expected to work and have someone else care for her kids? It doesnt help that for many years I was a single mom doing everything and was expected to be supermom. That woman is gone and has been replaced by a more tired, older looking model smilewinkgrin . Seriously though, what do you do when you can't care for  your family that day? Do you push through it and pay later when they aren't around, or do you rest and cry and let them do all you feel you should be? I need ideas to try to find the balance between causing more pain and still feeling selfworth.
The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them. That's the essence of inhumanity. George Bernard Shaw


Pelvic adhesive disease, Irritable bowel syndrome, SI joint pain, 7 pelvic surgeries for pain, ovarian cysts, adhesions, and a kidney stone! Wait, future medial transcriptionist I must say ureteral calculus!

nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 8/31/2010 7:17 AM (GMT -7)   

Dear Monty's Mom,

Reading your script is like reading a chapter out of my biography. Wanting so desperately to take care of your family like you want to but having a body that refuses to allow you to do that. I've lived this sort of life for 30 years or more. I can't tell you the last day that I didn't hurt physically and then hurt even more emotionally because of it.

It sounds like you have a terrific guy that cares a lot about you and wants to help you as much as he can. I know that it is hard to accept help sometimes even when we desperately need it. I was lucky enough to find that sort of guy, too. The only disagreements that we have are over me doing something that he thinks I shouldn't because he knows that it causes me discomfort.

It is hard to give up the reins and let someone else take over but sometimes it's the best for you.

I totally understand where you are coming from, girl. My prayers are with you and please know that you are not alone in this.

Nurse2


Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 8/31/2010 7:26 AM (GMT -7)   
Nurse, Tears are flowing because it is good to know I am not alone, but sad for you as well. Thank you for the advice. Does it get better after time passes, the disappointment in yourself for not living up to your own expectations for your family? You are lucky to have your husband, mine is a blessing too. He is helping me raise my sons to be good men. At times I forget how important that is too.
 

Hopegirl
Veteran Member


Date Joined May 2008
Total Posts : 704
   Posted 8/31/2010 7:37 AM (GMT -7)   
I am right here with you waiting to hear advise too. I too have a family that I take care of. I seem to come home from work every day and need to go straight to my bed. I was spoiled during the summer because I could lay down for an hour or so then get up and try to throw something together. School has started so no more late meals. I need to have a meal together as soon as I get home so my son can eat and digest his food before he goes to bed.
 
I know my crock pot is coming out!!

hydrangea
Regular Member


Date Joined Mar 2007
Total Posts : 190
   Posted 8/31/2010 10:49 AM (GMT -7)   
Monty's Mom.

First of all let me say that you ARE NOT alone with what you are going through on a daily basis. It sure does sound like you have a great caring compassionate husband and family....It is so easy for me to say to another person going through this same thing, and it sounds so logical when I am writing this to you:
We took care of our children and husbands as stay at home moms. When our body's were able, we cooked, cleaned, baked cookies, played with our kids, carted them around, and then yes still had the energy for fun after a long day. Our family's are now taking care of us,we may be very resentful about it, and not ready to except it. But we really do need to embrace it. They are doing it because they love us. We are at a different place in our lives right now.....for how long who knows, but really try to embrace the help and love they are giving. Your children are going to grow up to be very strong and compassionate young adults because of your pain. I don't know if that makes any sense?

I was actually having a similar discussion with my husband just last night.....Pity party I might call it. My family is wonderful, but I get very depressed about my pain. not being able to do the things I did with them years ago.I know that it also makes him sad well. But were are determined to still have fun.....even if it is just sitting in the backyard, watching a good movie together, or just talking. It is not worth hurting yourself or causing yourself more pain to do the physical things we used to do with our families. You don't need to be a spectator, we can still be involved Get everyone together and have a family meeting to brain storm some ideas.
Just because we are not running around playing ball with them we still are very important to our families.

One more thing......Being a stay at home mom is the best (and hardest) job in the world. I have to work now, but would love to be home everyday to see my kids walk in the door from school everyday. Even if I can not do the things I used to do when I did stay home. Let them bake you cookies when they get home!!!

Take care of yourself.

Hydrangea
"lIFE IS NOT WAITNG FOR THE STORM TO PASS.....IT IS about LEARNING TO DANCE IN THE RAIN"
Diagnosed crohns Disease, Bladder tumor and inflammation, Herniated disc, spinal stenosis, facet arthritis, degenerative disc disease, siatica, Three laparoscopis, hysterectomy, physical therapy, trigger point injections, spinal epidurals,
Meds lyrica, norco, amrix,metanx,pentasa.
Spinal Fusion 3/20

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 8/31/2010 11:56 AM (GMT -7)   
First, you are not alone and I applaud you for everything you do. Like the others who have posted, my husband and I have had this discussion too many times to count. Many men want to "fix" things. It's in their nature. They love us and want to make our lives as easy as possible. Many women want to "give" and "nurture" their families. It's one of the characteristics that maks us who we are.

CP is in direct opposition to everything we hold dear. We feel so overwhelmed and exhausted and then depressed and upset because we cannot accomplish what we feel we should. Our spouses feel the same, but in a different way.

I honestly believe your family does understand and only wants the best for you. You have to do what you feel is right and you have to concentrate on you too. If that means takeout and a messy house for a day or two, so be it. Clean and cook on the best days and enjoy them. They will take a lot out of you and you can recuperate with the knowledge that you have support and love at home.

I know you will make it through this rough time because you have so much support and so much to give. You are a very special person!

All my best!
Retired Mom

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 8/31/2010 1:25 PM (GMT -7)   
Dear Monty's Mom,
You post and the responses brought tears to my eyes and reminded me once again why I love this HW family so much! I spent most of my day in bed today because I am hurting so bad and now I am feeling guilty for it! My husband works hard everyday and comes home to help me cook dinner. I try not to complain because I can see the hurt in his eyes over my pain that he can not fix! CP is like a thief in the night stealing our life away! I tried to do a good cleaning on our bedroom the other day and my back hurt so bad it almost made me vomit....I broke into a cold sweat and my legs started shaking....it was bad! Then I cried because I can't even clean my house like I want to. My house used to be spotless and I worked full-time too....now I feel like I do nothing!!! I am sorry that I do not have answers for you....I wish I did for all of us! Please just know that you are not alone! You can only do so much and try not to beat yourself up for the things you can not do! Hang in there hun!

Hugs,
Beckey
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

damgalnuna
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 8/31/2010 4:38 PM (GMT -7)   
I've practically given up on the idea of being able to do housework. I try sometimes, but pay for it for days after doing something as simple as cooking a meal or doing a load of laundry. My husband is great in handling most of these things, but gets tired and gets behind. I gave in and hired a college student to come in one day to help us catch up on housework. He had so much energy and worked so hard. It looked like a new apartment by the time he was done. Totally worth the money.

Last night I had to admit to my husband that I could no longer handle cleaning my guinea pigs' cage. I strain my back so badly every time I do it. I felt bad, because he didn't want me to get them in the first place (he's not a fan of small animals like that). I told him I couldn't do it anymore, and asked if (1) he'd be willing to take over cleaning the cage, or (2) whether I should adopt them out to another family. I would have been fine either way. I really just want them to be taken care of properly. I haven't been keeping their cage nearly clean enough.

I can no longer do many child care tasks either. My husband handles baths because lifting her in and out, bending over to wash her, and other such things are hard on my back. I frequently come into the bathroom at bath time so I can spend some fun time with her (she *loves* baths). Then I'll handle combing her hair afterward. At bedtime, my husband brings her upstairs and reads her a story and puts her to bed. I used to come up too, but climbing a flight of stairs is hard on my back, especially late in the day, which is usually a high pain time for me. It usually will cause my pain level to increase dramatically. I already climb two flights of stairs to pick her up at preschool. Perhaps I should consider switching, and staying in the car while my husband gets her from preschool, and I go upstairs with her at bedtime. This has got me thinking.

This past weekend, I felt badly that I hadn't brought my daughter to the beach yet this summer. I guess that's a bit crazy, since many, many kids don't get to go to the beach since they live too far inland. But anyway, we spent a day at the beach (myself, my husband, my daughter, and my father-in-law). I went into the water, not even up to my waist, and the waves were so strong they kept almost knocking me over. And I had to get down on the sand so we could build sand castles and such. We went to an arcade to play skeeball (I used to be good, but not anymore), rode an old-fashioned arcade, and had a pizza lunch and ice cream cones. We had so much fun. My daughter finally got over her fear of walking on the sand (yes, you read that right!). But I paid for it dearly. Monday at work was torture. I didn't want to go, but I knew my boss would only be in the office on Monday and Tuesday, so I forced myself to make it in both days. I spoke with him today and updated him on my situation. (I do let him know details, even though it's not legally required. He is so caring and has been so helpful. The least I can do is be honest and keep him apprised of the situation.) He was nice enough to agree to let me work from home for the rest of the week (Wednesday-Friday) while he is traveling. This will allow me more time to rest and a more flexible work schedule (e.g. more frequent breaks to rest in the recliner or lay down or take a walk). He will be doing more dictation that he wants me to transcribe, but he will be mailing it to my home. This is why in my previous post that I feel badly for letting him down. I know it's not my fault, but still it upsets me. I'm so overwhelmed with handling work lately that I frequently end up crying. I'm trying to tough it out at least until after the MRI and surgical consult to see what my options are.

One day my daughter said that I'm a "mean mommy because I'm in pain." I hate how my chronic pain affects my family. I try not to let it affect my mood, but sometimes it takes over and I don't feel like I have any control. I get grumpy and snippy and just want everyone to leave me alone. This is not very conducive to being a mother to a 3-year-old.

I'm terrified of a week coming up in October when my husband has to go on a business trip. I will need to do everything myself. I could probably call my father in law to help with a few things. I do plan on asking him to help with taking the trash cans down from the porch to the curb on trash day, since they are far too heavy for me. I wonder if he could handle the bedtime routine one night so I can get a break. He's never babysat for her since he never felt like he knew what he was doing with respect to caring for an infant/toddler. But now that she's a young kid who uses the potty and can do many things herself, I don't see why he can't. He said he'd help more when he retires, which will probably be within the next year. That would be good. All of our other relatives live one hour or more away. And some would not be appropriate to ask for assistance (poor health, alcoholic, drug addict).

One responsibility I have kept is that I handle the family finances and any type of paperwork. This became my task because it's non-physical. But I have gotten behind lately, partly because of my condition and partly due to my own fault. I'm going to try to catch up soon.

Sorry for going on so long and kind of hijacking this thread. Your post got me thinking about my situation, and I guess I had a lot of feelings to get out. But I guess I just wanted to let you know that you're not alone in struggling with whether or not to still handle caring for your family or whether you should defer to caring for yourself. I used to try to focus more on caring for my family, especially when my daughter was a baby, but now that she's a bit older and my condition has worsened, I focus more on caring for myself and depend on my husband to handle housework and child care much of the time. I hope some of my ramblings help you (or others on this forum) in some way.
Scoliosis fusion w/rods - 1992; herniated disc - 1996; partial removal of rods - 1997; microdiscectomy - 1997; sudden inc. in pain - 2008; tried the following non-pharm treatments: PT, aquatic therapy, TENS, acupuncture, piriformis injections, selective nerve root blocks; other: depression, anxiety, add; current meds: lyrica, baclofen, vicodin, topomax, tramadol, welbutrin, ativan, ritilin

caligirl2001
Regular Member


Date Joined Jan 2010
Total Posts : 197
   Posted 8/31/2010 4:59 PM (GMT -7)   
Dear Monty's Mom, You are not alone. I am a stay at home Mom too, and there are many days I feel guilty for what I don't, or can't accomplish. It is easy to get down on ourselves for not being able to accomplish all that we want to, or feel that we should be able to. I have to battle myself too. I know what you mean about wanting them to see that we can't, but wanting to be able to do it all anyways. I have noticed that on the days I don't push myself, my pain is naturally less. It chafes my brain a bit to not do everything I wish I could, but physically, it is easier and less painful. It is very kind and loving of your fiance to want you to take care of yourself too. It shows a huge amount of compassion, and proves as well that you have found yourself a wonderful man. It is also great that you have a helpful cooperative family that works together.

I have had to learn the hard way that pacing myself is necessary, since the price of not doing so is far higher, and the fatigue and intensity of the pain lasts much longer when I don't. There are days I feel so lazy and down on myself, or don't do those dishes. But it has taken me a few years to learn my limits, and I try to stick to them even when I feel guilty about it. It's a lot easier to pace myself when the kids are in school because I only have myself to worry about 6 hours per day. Today, I had to grocery shop. Some things have to be done by me. And after I was done, I had to take a nap. I'm 37, and I had to take a NAP. But for now, that is what has to happen and most days, I accept it. :) I have learned that pushing myself and doing things anyway means that I can do less in the long run, not more. And I try to remember that I did not choose this, did not ask for this and would gladly not feel this way if I had the choice. But I can control how terrible I feel to a point by knowing my limits. I hope that helps a little!
Fibromyalgia, High BP, Migraines, anxiety, Non Celiac Gluten Intolerant
Current medications: Topamax, Maxalt, Lotrel, Wellbutrin

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 8/31/2010 5:18 PM (GMT -7)   
I think we all struggle with some of these issues. My occupational therapist has been a life line for me. She has tought me to change tasks once something is hurting, so if I'm doing dishes and its hurting to then go for a walk rather than sit down. Her thoughts are that you change muscle grouping, see every tasks s an exercise and change to move the pain around. Hope this makes a bit of sense to you.

As for the feeling guilt, I was feeling really guilty at the impact of my disease on my family and work etc but someone said to me its the disease not you thats causing this pain. You didn't ask for it, you have to accept it and live with it. Somehow we have to accept the pain as part of us and move on.

Talk to your husband about it, its lovely he is in protector mode but you need to be active, you can't give in to the pain continuously or you'rd never be out of bed. We all have days where we need to stay in bed but he has to understand that contributing to the house hold in ways that you still can makes you feel valued and necessary. Now don't do a "Pete" and completely overdo the housework but like my OT says, do what you can then change tasks. I often have lots of half finished jobs around the house but my family have accepted that now. They get finished eventually or they help me finish them.

Goodluck Monty's mom, golitho

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 9/1/2010 5:18 AM (GMT -7)   
There are so many good suggestions on here, thank you for all the ideas. It helps to know that my feelings are something others have felt and that recurrence is not a bad thing. I shared all this with my fiance, and he thanks you all for the kind words and helping me. I tell him all the time that he is wonderful as a husband and father, but it always means a little more coming from this forum to him. I think it may be that he saw I wasnt complaining about him, just asking for help with my issues.

The hardest thing for me is letting go of feeling I should do it all. Some days I do this well, and get things done a bit easier because of the letting go. Some days tend to go the other way. I never looked at it as though I didnt ask for the pain yet. That I am going to try today and everyday because it seems that once I understand that all this is not my fault things will begin to be better.

To all of you, thank you for the replies. Even knowing that I am not alone or going crazy makes a world of difference. Also, getting six hours of uniterrupted sleep helped too!
The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them. That's the essence of inhumanity. George Bernard Shaw


Pelvic adhesive disease, Irritable bowel syndrome, SI joint pain, 7 pelvic surgeries for pain, ovarian cysts, adhesions, and a kidney stone! Wait, future medial transcriptionist I must say ureteral calculus!

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 9/1/2010 7:21 AM (GMT -7)   
I struggle everyday with guilt from not being the Mom I used to be. I have 5 children ages 19,17,11,9 and 7. They are all very understanding that Mom can't do the things she used to and the older ones are very helpful with the younger ones. Thanks for the book suggestion, I am going to see if I can get one. I hope everyone is having a low pain day...take care.
Gentle Hugs,
Shannon

Fibromyalgia, Chronic daily headaches, Migraines, Possible Graves Disease, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 9/1/2010 7:46 AM (GMT -7)   
Dear Montys mom;
 
Reading your post is like reading a script from my own life and my heart goes out to you!  I know what it feels like to want to do more for the family and not being able to.  Recently my husband and I moved to KS from WY and I swore that the house that we bought would never look cluttered like the old one.  I did really well at first.  Wanting everything to be totally clean and making sure  that supper was on the table when hubby got home from work began to take its toll on me after two weeks in the new house.  Hubby, like your fiance, took things under his own control and told me the same thing that your fiance told you...."Don't worry about it".  But I do!
 
He works ungodly hours and sometimes doesn't get home until 8-9pm.  I struggle with this each day!  I can't vaccum the floors and with three labrador retrievers the hair builds up big time!  So I bought a smaller vaccum that I could push around the floor but then I found myself having to empty it more often and then I found myself having to take breaks with it too!  Not a cool feeling to think that your worthless!
 
But....I found that if I do things a little at a time I can get a few things done.  Since our washer and dryer are in the basement, hubby is in total control of the washing, which upsets me because he doesn't do my laundry like I like it done.  So one day out of the week I go down the stairs (very carefully of course) and do my own laundry so that it is done the way I like it.  Then I leave the basket down stairs for hubby to bring up that evening.  It works out pretty good and makes me feel like I've accomplished something.
 
Plus, I just have retired my thoughts to I cn't do what I used to and that's okay with me and hubby.  Huggsss and I hope you find that balance that you need.
 
Scarred

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 9/1/2010 10:38 AM (GMT -7)   
Scarred and damouthy,

Thank you for the support. I really needed that, and realize now that at times we all do, male or female. We just seek it in different ways. I have been doing small things, small accomplishments. At this point I am happy if I just manage to shower and have some kind of dinner ready with my family. Even sandwiches made by all hands together is still a family dinner!

Digital Desperado, nice name! Thank you for the book suggestion, I will definitely either make a trip to the library for that, or order it off Amazon.

I learned from all of you that balance will come with time and practice and much support. I am lucky to have my family, and my friends on here to help!

Gentle hugs today,
Mindy
The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them. That's the essence of inhumanity. George Bernard Shaw


Pelvic adhesive disease, Irritable bowel syndrome, SI joint pain, 7 pelvic surgeries for pain, ovarian cysts, adhesions, and a kidney stone! Wait, future medial transcriptionist I must say ureteral calculus!
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